Hello my name is Sue, and I live in Orillia, Ontario Canada, just north of Toronto, and would like to pass on to my fellow em buddies, that Dr. Scott Walsh from Sunnybrook Hospital in Toronto was the one who finally diagnosed me after seven years of trying to figure out what I had.
You will need your family physician or dermatoligist to refer you, but I am confident that Dr. Walsh is the one who will help you.
Thank you
Sue Czetwerzuk Keep smiling ;) xo
Sue, I am curious what treatments Dr Walsh has you on, or which treatments he has tried.
Thanks Sue, saw Dr. Walsh today....finally someon who recognizes EM...sent me for many many blood tests, has to check to see if primary or secondary condition..have to go back in 5 weeks for results of bloodwork. Put me on an epilepsy drug...forgot the name, will pick up prescription later...said to try it, and see if it helps me. He saw how much difficulty I have walking...am going to get a handicap parking permit from my family doctor as so difficult to get around. Will keep yu posted after see him again. thanks again so much.
what treatments have you received, and what type of EM do you have
what do you mean, what type? primary or secondary?
Hi Lauri, Dr. Walsh has put me on many different meds that really made me worse and the side effects were worse than the em. I started on cymbalta for about 3 years, then keppra for about a year and a few others that I didn't like because the side effects were awful. I have done reasearch and just trial and error of what works for me. One of the main things that I have been able to figure out is that because em deals with the nerves I try and keep them as relaxed as possible, easier said than done sometimes but I take clonzepam 0.5 mg twice a day and unfortunately pain meds 2 times a day.
I have develope unique ways to try and maintain a good quality of life. I have gloves in the freezer so I can cook, I am trying to get a scooter so I can go out and not be such a burden on my family and friends because walking too much flares me up that it feels like I am walking on coals. I also drink lots of water and take magnesium.
Sorry took long to reply, hope I have helped.
Sue
Lauri said:
Sue, I am curious what treatments Dr Walsh has you on, or which treatments he has tried.
If you have secondary em that means there is an underliying condition causeing em and you can treat that condition and it will help em, but if you have primary em there is no cause and have to learn to adjust and live with it. Hopefully you will find the treatment that helps you, maintaining the pain is difficult.
Bingolover said:
what do you mean, what type? primary or secondary?
Sue said:
If you have secondary em that means there is an underliying condition causeing em and you can treat that condition and it will help em, but if you have primary em there is no cause and have to learn to adjust and live with it. Hopefully you will find the treatment that helps you, maintaining the pain is difficult.
Bingolover said:what do you mean, what type? primary or secondary?
Mexicanrose said: I don't have the deep red colouring on my feet...just the tops of my feet & my legs will sometimes flush a light pink colour, but not always. I wouldn't say the skin feels painful...more like a mild sunburn. My Family Doctor doesn't know what this is, but feels it could be caused by one of my medications because I've had a sensitivitiy
to this medication in the past. We discussed coming off this medication, but my nephrologist didn't want to change my medication when I saw him. I see him again in 2 weeks.
I don't want to diagnose myself..maybe I don't have Erythrolelalgia, maybe I do, but this not knowing what's going on with my feet & legs is driving me crazy. I also have an appt. with an Endocrinologist.
Sue said:If you have secondary em that means there is an underliying condition causeing em and you can treat that condition and it will help em, but if you have primary em there is no cause and have to learn to adjust and live with it. Hopefully you will find the treatment that helps you, maintaining the pain is difficult.
Bingolover said:what do you mean, what type? primary or secondary?
Hi Sue...you live relatively close to me..say about 1/2 hr. I'm not sure if I have EM or not..but I do have burning in my feet...just on the tops, & also my legs. I wouldn't say the burning is painful...more like a mild sunburn. My family doctor isn't sure what this could be, & we've had an ultrasound done on my legs. Also, he suspects I may have a reaction to one of my medications. I asked him why my symptoms were spreading rather than staying the same if indeed the cause is from a medication, but I can't honestly remember his answer. He suggested that I could come off the medication to see what happens, but my Nephrologist didnt' want to change any medications when I saw him. I do have an appt. in about 2 weeks, so I'll see what happens. I was referred to a Nephrologist because we're having problems getting my bp down.
Also, I have an appt. to see an Endocrinologist...my doctor thinks my symptoms could be hormone related..so we'll see.After reading all the information on this site, I'm armed with information to take to the Endocrinologist..& I also
have a referral form for a Dermatologist. I'm hoping my symptoms are just what the family dr. suspects..that it's medication related...but I do wonder if I do come off the medication, will the symptoms go away?
Mexicanrose said:
Mexicanrose said: I don't have the deep red colouring on my feet...just the tops of my feet & my legs will sometimes flush a light pink colour, but not always. I wouldn't say the skin feels painful...more like a mild sunburn. My Family Doctor doesn't know what this is, but feels it could be caused by one of my medications because I've had a sensitivitiyto this medication in the past. We discussed coming off this medication, but my nephrologist didn't want to change my medication when I saw him. I see him again in 2 weeks.
I don't want to diagnose myself..maybe I don't have Erythrolelalgia, maybe I do, but this not knowing what's going on with my feet & legs is driving me crazy. I also have an appt. with an Endocrinologist.
Sue said:If you have secondary em that means there is an underliying condition causeing em and you can treat that condition and it will help em, but if you have primary em there is no cause and have to learn to adjust and live with it. Hopefully you will find the treatment that helps you, maintaining the pain is difficult.
Bingolover said:what do you mean, what type? primary or secondary?
So far after several years seeing Dr. Walsh at Sunnybrook have been on quite a few different medications. I have learned that my EM is not genetic, not secondary as far as they can tell. I have developed bad carpel tunnel in both hands and am scheduled for surgery in Feb. for my right hand...my EM is visible on most of my body...even my face...my walking is the most difficult because only good for short distances. I have a walker and a wheelchair...if going anywhere involving walking for more than say 20 minutes we take the wheelchair...no medication so far has alleviated my symptoms. The only thing that helps me is smoking pot. So far it helps a lot with the pain. I have developed a severe pain in my left foot in one toe...and recently have started having the same pain in my other foot in two toes. This is different from the pain of my EM...it is a knife like pain and can come in the middle of the night or during the day...sometimes for short periods, sometimes for long. So far Dr. Walsh does not really know why. Had tests done but inconclusive. Sunnybrook being a teaching hospital I get to see many doctors prior to seeing Dr. Walsh. He is my primary care provider for my EM and see him on a regular basis.
Medication is toss up. What works for one person may not for another. We keep testing drugs. Am changing again, have to pick up my new prescription today. It is a combination, when I get them will post the names and periodically if they are helping.
Wow- amazing you guys live so close.
Bingolover, please do post about what is helping and not helping you.
Moderator team send you well wishes :-)
HI All,
Are there any other doctors you could recommend in Canada?
A friend of mine is very ill with E.M. among other things and can not find help.
I will tell her about Dr. Walsh for sure. But any other names in Canada would be incredibly helpful, too.
Thank you!
Skibunny. Just saw this. Not on PC but will send later :)
| Dr. Pierre Raymond Joseph Bourque | Division of Neurology | Ottawa Hospital, 1053 Carling Ave. | Ottawa. Ontario | K1 | K1Y 4E9 | Canada | (613) ■■■■■■■■ |
| Dr Raed Alhusayen | Sunnybrook Health Science Centre , M1-700. | University of Toronto Clinic, 2075 Bayview Avenue | Toronto, Ontario | M4 | M4N 3M5 | Canada | 416 480 4908 |
Thank you so much.
I can’t tell you how much I appreciate this info.
I will be passing the info on today.
Hi there. Dr. Tom Miller at St. Joseph's Hospital in London, Ontario is amazing. He knows a LOT about EM and keeps up with the latest studies and conferences about EM.
Skibunny said:
HI All,
Are there any other doctors you could recommend in Canada?
A friend of mine is very ill with E.M. among other things and can not find help.
I will tell her about Dr. Walsh for sure. But any other names in Canada would be incredibly helpful, too.
Thank you!
Thank you so much. I will pass that info on.
I really appreciate it.
Skibunny said:
Thank you so much. I will pass that info on.
I really appreciate it.